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Retrospective outcomes studies for orphan diseases: challenges and opportunities.
Sun P, Garrison LP. Sun P, et al. Curr Med Res Opin. 2012 Apr;28(4):665-7. doi: 10.1185/03007995.2012.673480. Epub 2012 Mar 20. Curr Med Res Opin. 2012. PMID: 22432785
Retrospective outcomes studies for orphan diseases are scarce in the literature because of the significant methodological and data challenges that researchers have to overcome. ...With the introduction of two retrospective orpha
Retrospective outcomes studies for orphan diseases are scarce in the literature because of the significan
Primary Immune Deficiency Treatment Consortium (PIDTC) update.
Griffith LM, Cowan MJ, Notarangelo LD, Kohn DB, Puck JM, Shearer WT, Burroughs LM, Torgerson TR, Decaluwe H, Haddad E; workshop participants. Griffith LM, et al. J Allergy Clin Immunol. 2016 Aug;138(2):375-85. doi: 10.1016/j.jaci.2016.01.051. Epub 2016 Apr 22. J Allergy Clin Immunol. 2016. PMID: 27262745 Free PMC article. Review.
An additional 3 European centers have partnered with the PIDTC to study CGD. Natural history protocols of the PIDTC analyze outcomes of treatment for rare PIDs in multicenter longitudinal retrospective, prospective, and cross-sectional studies. ...Fund …
An additional 3 European centers have partnered with the PIDTC to study CGD. Natural history protocols of the PIDTC analyze outcomes
Paediatric heart transplantation: life-saving but not yet a cure.
Boucek R, Chinnock R, Scheel J, Deshpande SR, Urschel S, Kirklin J. Boucek R, et al. Cardiol Young. 2024 Feb;34(2):233-237. doi: 10.1017/S1047951123004146. Epub 2024 Jan 23. Cardiol Young. 2024. PMID: 38258454
Addressing these challenges faces the reality that for-profit research favours funding adult recipients, with 10-fold greater numbers, and their more modest longevity goals. Advocacy for funding "incentives" such as the Orphan Drug rules in the United States and uph …
Addressing these challenges faces the reality that for-profit research favours funding adult recipients, with 10-fold greater numbers …
Interventional Bronchoscopic Therapy in Adult Patients with Tracheobronchial Mucoepidermoid Carcinoma.
Chen H, Zhang J, Qiu XJ, Wang J, Pei YH, Wang YL. Chen H, et al. Chin Med J (Engl). 2017 Oct 20;130(20):2453-2458. doi: 10.4103/0366-6999.216417. Chin Med J (Engl). 2017. PMID: 29052567 Free PMC article.
BACKGROUND: Tracheobronchial mucoepidermoid carcinoma (MEC) is a rare airway tumor in adults for which surgery is considered a first-line treatment. ...METHODS: We retrospectively analyzed the clinical manifestations, bronchoscopic interventions, complications, and …
BACKGROUND: Tracheobronchial mucoepidermoid carcinoma (MEC) is a rare airway tumor in adults for which surgery is considered a first- …
Pulmonary disease caused by M. malmoense in HIV negative patients: 5-yr follow-up of patients receiving standardised treatment.
[No authors listed] [No authors listed] Eur Respir J. 2003 Mar;21(3):478-82. Eur Respir J. 2003. PMID: 12662005 Free article.
The literature concerning the management of pulmonary disease caused by Mycobacterium malmoense consists of retrospective reports on small series of patients. A recent multicentre trial conducted by the British Thoracic Society provided an opportunity to prospective …
The literature concerning the management of pulmonary disease caused by Mycobacterium malmoense consists of retrospective reports on …
GHOST Protocol: Greatest Healing Opportunity for Soft Tissue, a Treatment Paradigm for Complex Sarcoma Reconstruction.
Kobraei EM, Eberlin KR, Ricci JA, Reish RG, Winograd JM, Cetrulo CL Jr. Kobraei EM, et al. Am Surg. 2015 Jun;81(6):557-63. Am Surg. 2015. PMID: 26031266
In addition to evaluating clinical outcomes, cases were reviewed to identify factors associated with excellent or poor patient care. Review of these cases formed the basis of the greatest healing opportunity for soft tissue (GHOST) protocol. Our patient popul …
In addition to evaluating clinical outcomes, cases were reviewed to identify factors associated with excellent or poor patient car